For those of you who have been diagnosed with Chiari - how often do you have symptoms? Do they come and go? Do they come in episodes lasting a hour, a day, a week, a month... then gradually go away, but come back again? For females does it ever seem your symptoms get worse during your period or before or after?
I have some similar symptoms to Arnold Chiari... still waiting on MRI, but Doc thinks I'm having Migraine associated vertigo (no headache) - I don't know what to think though... my vertigo/dizziness has changed drastically over the past 2 months and last month was horrible (I barely could function).
Vertigo used to be my main symptom, but now I just have this strange dizziness/disequilibrium/head fuzz sensation that can give me a headache and makes cognition and concentration very slow... my speech gets messed up and a few times I've had slight tingling in my jaw. What was really scary was last month during an intense episode I forgot how to cut lettuce. I was just standing at the counter staring at the cutting board, knife in hand, and lettuce on the counter. I started cutting it, but knew it was wrong, and couldn't remember how to do it. My husband came in and was like... WHAT are you doing!?!
If Chiari isn't it... then I guess its migraines... just weird ... any advice, comments.. shared experiences are welcomed!!
Well u do have a bunch of questions, I will try my best to get them all....if I miss ne, please just tack them on to this thread again....
How often I have symptoms...well I am post op...so it depends on what I do...b4 it was all the time...they would get worse from time to time.....and yrs ago the symptoms cycled...so yes, they can come and go.During our monthly many are said to experience additional issues.
There are many issues that can have the same symptoms and is y the drs will test us for several conditions to rule them out and to verify what it is or could be.
I had one episode where I put the tooth paste on the wrong side of the tooth brush...it was the brush end, just not the brush side...and I remember thinking y does the brush look different...lol....but I put the paste on....
I pray u get answers soon from ur drs...do ask for copies of all tests plus the reports...this makes it easier to get a 2nd opinion.
mine would come and go before surgery...they would cycle as some call it. when i was in my "cycle" of symtpoms it was bad. then they would go down in intensity and all would be ok....i would be able to function somewhat better.
so they could cycle. no two people with our very beloved diagnosis are the same.
hope this helps.
hugs to you
At the beginning, my symptoms definitely cycled. What I found is that every time they came back, they were worse than the time b4. It's not that they really ever totally left but they would subside into a state that wouldn't cause me any worry. As they came back, it would start affecting more of my body..for example, at first it was the headaches, dizziness and the swallowing, then it started to affect my right arm, then came the limb weakness etc...etc.. Finally, something had enough and they all decided to stay for good and it progressed to affecting my gait. My episodes usually were weeks at a time, with maybe a week or so relief in between. Just enough to make me believe my Dr..that is was all stress related.
So..don't be misled as I was and think that b/c your symptoms go away that they are gone for good. I find now post op, that most of my flare ups are triggered by certain things I do. I realize that you haven't got a dx yet but I think you should be careful with what you do...no neck stressing activities.
Mine is definitely worse at that time of the month!! I still have leg issues and it intensifies that pain down my legs as well as I am guaranteed to have a headache.
As for the lettuce episode...I put my 2 yr old at the time is his highchair for a snack and forgot where he was!! I ran around my back yard screaming for him, thinking he escaped out the back door...meanwhile he was calmly eating his snack in the kitchen. Even when my older son said he found him in the highchair I even thought then "how did he get in there by himself?" Finally it dawned on me and I really thought that I was cracking...so don't feel too bad!!
I really hope and pray that your MRI gives you some kind of clue of a dx!!
Yes, my symptoms did cycle. Sometimes REALLY bad. To the point where I could not walk or drive. Usually when I did too much. I was the worst right before and after the Thanksgiving/Christmas holidays. If I didn't exercise too much I think I had less symptoms. You just have to know your body and know when enough is enough or you will pay. The constant symptoms I had before surgery on 6/30 were HA(felt like someone was sitting on my head or squeezing the back of my head down by my neck), dizzy, foggy thinking and arm heaviness/hand pain. We'll see what the surgery did for me when I'm done healing.
This site has been my savior and I hope it helps you out if you do find out you have CM.
Good luck with everything.
Kim in NH
Chiari can cause all of those types of things to happen. You may have good days and bad days. Sometimes I have different symptoms at different times. The reason for this is that the cerebellum controls and does a lot of things for us. Keeping that in mind medical science really is unsure on what all the cerebellum does for us. They know it controls motor skills, balance, muscle usage, but besides that they know it does other things because they can see it on scans working and doing things but they are unsure what. I recently learned this at a Chiari conference I went to.
My symptoms used to cycle, but for about the last four months they have been constant. The intensity differs depending on certain situations. The headaches are much worse when it rains, when I am sitting in a car, laying on my back or right side, etc. The head pressure is always there though to some degree along with neck and shoulder pain. I also get dizziness, vertigo, tingling and lower back pain but these come and go. I have also had episodes where I couldn't remember how to do something. For example, I was cooking pasta one time and had the water boiling and I just stared into it wondering what to do next. I also experience a lot of anxiety, especially in crowds. I always thought I was nuts, but things are making more sense now that I know what is going on with my brain. I do feel worse around the cycle time. I have not had surgery. I will have a lumbar MRI and brain MRI with cine in August to find out more. I wish you the best!
Hello and sorry you are going through this. Mine come and go. Some days worse than others but i always hve A baseline headache...... I am always dizzy too some days I can stand up others I can manage to get through. Mine are usually worse with weather and crazy as it sounds the full moon. Which happens to be the same time as my monthly friend. So It may be hormone based. All I know is being dx was the easy part. Getting a doc to recognize and treat is hard and the symptoms as random and annoying as they are don't get better but u do learn how to live with them. What to do and not do. And that helps prevet the bad days too. Good luck.
i just had a ct the other day after i passed out it showed chiari malformation. since my er visit i have had alot more side affects come on very quickly!! im really scared and noticed yesterday one of my pupils is much larger than the other i cant see a neuroligist for another week is this a symptom i should seek emergency attention for?? someone please help!
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